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Media Coverage of Living Donation

In a group (supposedly) for living organ donors, a person who serves as a kidney broker*, helping would-be recipients locate willing stranger donors, deluges the membership with the ‘happy’ donor stories so prolific in the news. One of the more recent quoted the kidney saying that donating ‘was no big deal’. I remarked with these stories do a huge disservice to all living donors, especially those who experienced problems post-donation.

Naturally, another person took issue with that, stating that the happy donors ‘are entitled to have their stories told’. When I pointed out that these stories are planted by the transplant centers to further their agenda of promoting living donation – well, let’s say she didn’t like that much either.

 

So I decided to conduct a brief experience: inventorying the US media’s coverage of living donation** as it comes through my google alerts. I’ll note –

A.  if the story is a happy one,

B. if the story contains a quote from a transplant professional (especially someone from the hospital, as opposed to a local OPO or kidney disease organization),

C. if the story addresses the possibilities of risk/complications in any way (especially if a statement relies on Segev or Ibrahim to mention LD life expectancy, or rates of kidney disease; spare kidney/live with one kidney; minimal risks/relatively safe; false info),

D. if the story gets any of the facts wrong

E. If the story promotes a specific transplant center

F. and if the story is pimps for money (donations, fundrasier).

 

July 18, 2013

1. New Jersey man’s high school crush to save his life with a liver donation: Geeky guy has crush on cool girl in high school. They reunite at 25-year high school reunion, get married two months later, and she gives him 2/3 of her liver.

“There is an up to 25% chance that she will get complications from the operation.”   No, there is a 40% chance of complications, says pretty much everyone. Oh and deaths are inevitable. The reporter gives no source for the statistic.

At the end of the story is a link for folks to donate to their medical bills.

 

July 19, 2013

2. Former Superintendent Gets New Kidney: Story centers on Cincinnati kidney transplant recipient’s life, with mention of his anonymous living kidney donor who “for now” wishes to remain anonymous. IOW, completely recipient-centered.

 

3Live liver donors could ease U.S. organ shortage crisis, adopted siblings show. Contains quote from an Organ Procurement Organization (OPO – the regional organization which is paid to allocate deceased donor organs) which the writer calls an ‘advocacy agency”. Quotes from a transplant surgeon. Promotes specific transplant center’s live liver donor transplant program.

“Overall, the risk of early death among live liver donors is about 1.7 cases per 1,000 donors, according to a 2012 paper led by Dr. Dorry Segev, a transplant expert at Johns Hopkins Medicine. There have been four deaths of living liver donors among the more than 4,300 transplants performed since 1999, according to OPTN.”

What is the definition of “early death”? Any death of a liver donor prior to what would be expected of a cohort-matched non-donor? Because no such data exists.

Also, there is plenty of evidence to prove that more than four deaths from live liver donation have occurred in the U.S. Why OPTN continues to perpetuate this lower, erroneous statistic is something only they can answer.

I also find it interesting the writer mentioned Mike Hurewitz’ 2002 death, but said nothing about Ryan Arnold and/or Paul Hawkes, both in 2010.

 

“For comparison, OPTN officials estimate that there were 30 deaths of living kidney donors between 1999 and 2011, out of more than 83,000 live donor transplants.”

Except that a slide from an official OPTN presentation states that 44 living kidney donors died in the U.S. in 2000-2009 within 12 months of surgery.

 

But both siblings are back to work and have resumed normal lives with their spouses and kids. Kilcup ran a half-marathon within three months of the swap.

And

Now, she’s become an advocate for live liver donation.

Absolutely no mention of the 40% live liver donor complication rate.

 

July 21, 2013

4. Wife to give husband a kidney. Despite the headline, the article details the husband-recipient’s travails with health issues and providers which eventually lead to the need for a kidney transplant. The wife, his soon-to-be living kidney donors, is mentioned as the “happy ending”.

Mentions the transplant center where surgery will take place.

Nothing about risks of living kidney donation.

 

June 22, 2013.

5. NINTH CIRCLE Hosts Benefit Show To Find Kidney Donor. Just what it sounds like, a Los Angeles band is having a show to “get as many people screened to become a donor and ultimately find someone who is a match for…” a fan.

I wonder if any of the band members have stepped up to be tested?

(It probably goes without saying, but since that’s the purpose of this post, I will: not a darn thing about process or risks of living kidney donation)

 

June 24, 2013.

6. Twist helps kidney donor save dad, husband. See my rundown here (yeah, this one was so bad it warranted an entire post of its own). No talk of the reality of living donation at all. University of Maryland Medical Center’s publicity for their paired donation program.

 

7. Social media helps link kidney donor and recipient with rare blood type. Fluffy article about public solicitation for a living kidney donor. No mention of anything related to living donor risks, process or otherwise. The procedure hasn’t happened yet.

But it did pimp a fundraiser (and link to it).

 

July 25, 2013.

8. Social media helps link kidney donor and recipient with rare blood type. What it sounds like. One sentence referring to recipient’s insurance paying ‘most’ of the costs, and LKD taking time off work after donation. Nothing else about risks, complications, or consequences.

Oh and a link to a fundraiser.

 

9Spokane pastor’s decision to give kidney leads to second match. Promotion of living donation via “God”.

Quote from transplant center’s Transplant Services Director regarding ‘advantages’ to living donation (for recipients, of course).

Quote from LKD about testing process, and early post-donation fatigue.

Nothing about risks of living donation.

Promotion of Sacred Heart’s program via living donor transplant statistics.

 

10. Facebook helps man find new kidney, hope for future. Professor’s kidneys fail, he has a transplant. Almost two decades later, he’s diagnosed with cancer [<- what the article doesn’t say is that anti-rejection meds greatly increase a person’s risk of cancer]. After the cancer treatment, he needs another transplant [<- second omission: certain drugs used in chemotherapy are nephrotoxic, meaning they can damage kidneys, causing them to fail.] One of his students solicits for him, and a woman responds and gives him kidney.

– many sentences about student’s new project to help other folks find kidneys – IOW promotion of living donation with no regard to donor protection. 

– Quote from transplant surgeon about the ‘need’ for kidneys, cites inflated wait list.

– surgeon also repeats lie from Segev & Ibrahim about living kidney donors’ lifespans.

 

July 27, 2013.

11. Man gets kidney from daughter, then granddaughter.

– Misconception spread by LKD grandaughter: “you can live with one kidney, so why not?” [How about this and this and this and this and this for reasons ‘why not’?]

– pimped specific transplant center.

– Quote from recipient which is erroneous and dangerous: “Becoming a donor is really not that dangerous, and the good it does, really outweighs the little risk,” Willie West said.

– no mention of living donation’s complications or risks

 

12. Local Teen Needs Kidney Transplant. Solicitation for adolescent boy in need of a kidney.

– no factual information regarding transplant, living donation process, etc

– Links to the solicitation websites.

 

July 28, 2013.

13. Families find hope on social media for relatives needing organ transplants. Recipient-centered article about soliciting using social media to find a living kidney donor. Nothing about the risks or process of living donation at all.

 

July 29, 2013

14. Donor found for 14-year-old Ware boy with kidney failure; community rallies support. Article centers around 14-year would-be recipient.

– Brief mention of potential living donor.

– ‘passed array of testing’

– no mention of complications, risks, etc.

– promotes fundraiser for recipient

 

15. Kindness of a stranger: Woman donates kidney to her customer.

– mentions specific transplant center

– detailed info about recipient’s kidney disease

– lots of “God-talk”

– small paragraph about evaluation process

– Screwed up the mortality statistic. Says “0.6 percent out of 10,000 donors”. It should say 0.6% OR 6/10,000.

– Also says “all costs [for donor] were covered by [recipient’s] insurance” which is untrue. Travel, lodging, food, childcare, lost wages, mental health treatment, etc. are NOT covered by the recipient’s insurance.

– Refers to the procedure as ‘minimal’  <- WRONG.

– No mention of other living donor risks or complications.

 

I was out of state for a week so I fell way behind on my google alerts. I had all intention of catching up and including them here, but well – I’ve got a full schedule these days. I suspect, however, I’ll be revisiting this topic at a later date.

 

In conclusion:

15 articles

15 ‘happy’ stories

10 erroneous statements or facts (including one regarding the wait list)

13 omissions of donor complications, risks or consequences

5 quotes from ‘experts’

6 transplant center promos

5 fundraisers

 

 

PS. Google alerts also delivered the following:

– transplant center video or webpage on living donor transplant – 7

– surgical, medical, technical topics – 8

– and multiple articles from outside the U.S.

 

 

*I’m sure she would argue with my characterization as a kidney broker, but that is indeed, the role she plays.

**including live liver donation, although there should be far fewer articles pertaining to that

Permanent link to this article: http://livingdonorsarepeopletoo.com/media-coverage-of-living-donation/

12 comments

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  1. Gordon

    LKD here; I read your posts with interest and a recurrent wish. You object vehemently to the characterization one recipient made above: “Becoming a donor is really not that dangerous, and the good it does, really outweighs the little risk,”

    I suggest your argument would be much stronger with some context: not-dangerous>>> Compared To What?

    Simply take the organ-donor morbidity statistics, at least, and compare them to military service, firefighting, driving to the airport, having a baby, walking down stairs. etc. Life is not risk free, and some people do in fact take risks for a greater good. Your POV is that organ donors underassess the risks; do firefighters? Cops? Pregnant moms?

    The complications statistics would be more … complicated. But nice if you could at least compare donor complications with similar operations/procedures. Might have to do some shading — is an appendectomy as complex as a laparoscopic nephrectomy? Gall bladder out?

    Many useful enterprises involve occasional loss of life. No major bridge would ever be built if we required perfect safety. No plane would leave the ground.

    I hope this is helpful and I saw you are busy w other concerns. I think if you can make the contextual connection, more will be accomplished.

  2. Tantemorte

    Gordon,there is no comparable operation to living donation…no other surgery removes a part of the body that is perfectly healthy.This surgery is not done for the benefit of the donor.The donor will not be expected to feel better afterwards.
    Let’s see,what can you compare the risks & danger to?
    How about the actual risks and dangers that don’t get reported or mentioned or acknowledged.The point is,saying ‘it’s not that dangerous’ is ignoring the fact that all surgery is dangerous and perpetuating the ‘not dangerous’ view is misleading.
    What’s wrong with more education about the real risks of donor surgery so potential donors are aware of them,can make an informed consent one way or another & be ready for specific things instead of having sometimes disastrous side-effects without even the benefit of foreknowledge?

  3. LDPeopleToo

    Your beef, I think, is more with the person who made the original statement in the article, because s/he is the one who provided no context. An attentive reporter would never publish such an unfounded statement, but unfortunately, too many newsrooms have been gutted of their highly skilled members, and deadlines are always looming.

    I’m not about to get into a philosophical argument about “life’s not safe” because it’s moot. Firefighters, military, police, and others in high-risk professions undergo intense training and are given proper equipment. Living donors are not. Until this year, 2013, there were no national standards of living donor treatment at all, and even now, those standards contain so much variability that transplant centers inform prospective LDs that even if they’re turned down at one facility, they can be deemed acceptable at another.

    The standards passed at the end of 2012 were based on a Joint Societies Consensus Document published in 2011. In that document, they admitted that even after 50+ years, they’ve done no research on the best way to evaluate a potential living donor. This means they have no clinical data to know what keeps a living donor healthy for the short or long-term. And let’s not forget that we have NO comprehensive short or long-term data on living donors (despite what Segev and Ibrahim would like us to believe). Can the same be said for cars, bridges, etc?

    When an individual such as the one in the article says that donating a kidney is not dangerous, s/he might as well be saying that living donation is safe, because that’s what the average reader will hear or comprehend. “Safe”, in research terms, means that a treatment has the same risk factor as every day life, eg. a hangnail. In no way, shape or form does that apply to living donation.

    I’ll close with a quote from Klintmalm (2008):

    The death of a donor can never be considered the same as losing a patient on the waiting list. The patient suffers from a lethal disease, while the donor does not. Not 20, 30 or even 50 patients dying on the waiting list for a transplant can justify the death of a single healthy donor.

  4. Gordon

    Hi Tantemorte~ I see my suggestion is not registering yet. Using “it’s dangerous” as the flag under which to march is not persuasive without answering “how dangerous?” Example: suppose using cyanoacrylate glue (crazy glue, related to cyanide) doubled my lifetime chances of getting cyanide poisoning. That would make a good headline or blogpost — but if my lifetime chance was .00002% to begin with, it is still trivial when doubled.

    I fully support better education of and followup with donors and potentials, but without context and comparisons, the cautions are hollow. This is why, in a credible news report, statistics for the layperson are put in terms of “you’re as likely to experience [fill in the blank] as you are to be hit by lightning.” I certainly did such research before my donation. Here’s a book I know is helpful and good-humored: http://tinyurl.com/m86n9co

  5. Tantemorte

    Funny you should bring up statistics…that is exactly what the problem is when it comes to the difference between ‘dangerous’ & ‘not dangerous’.
    It is dangerous,the statistics are there but it is being ignored in favor of not informing donors.Instead,they are being shown the statistics for successful ones (i.e. ones that ostensibly didn’t hurt the donor enough to cause an issue) which are inaccurate at best because donors with post-donation issues tend to get swept under the carpet & their issues never reported…heaven forbid discouraging future donors!
    And besides,in layman’s terms,’it’s not dangerous’,right? Easier than to explain the risks…
    If 6 out of 10 000 donors die….the odds of dying are, let’s see: 1.4 in 10 000 for firearms discharges,1.3 in 10 000 for air accidents,8 in 10 000 for drowning,7 in 10 000 for fire-related.And those are accidents.Not by choice.You’re better off playing with guns and might as well play with the matches,same chances.
    And you can’t compare these odds to a surgery that is meant to make a person better.A donor has 0% chance of being better than before donation and a 100% chance of being worse,whether as a sick person has actually has high chances of being better after a surgery.
    And that is for the death rate…not the complications,the rates of which are higher.
    BTW… the credibility of a news report has nothing to do with putting statistics in layman’s terms.That just shows the level of intelligence it’s aimed at.
    tp://www.nsc.org/news_resources/injury_and_death_statistics/Documents/Injury_Facts_43.pdf

  6. Tantemorte

    The chances of doing something,by the way,do have an effect on increasing the risks.If you don’t donate a kidney,your chances of dying from a kidney donation are zero.If you do,your chances are say,6 in 10 000.It’s not a cumulative effect,it’s not the risk of driving every day & maybe dying in a car crash.One ostensibly (if one drives or is driven) travels thousands & thousands of hours in a car for a 24 in 10 000 chance of dying in it….but it only takes 1 occasion to gain an instant risk 6 in 10 000 of dying of kidney donation.It does make donation,in perspective,dangerous.Even if you only count the ‘chance of dying’ part.

  7. LDPeopleToo

    Just a note: that whole 6/10,000 stat only refers to deaths within a short time following surgery and that are deemed ‘directly’ caused by the procedure. It doesn’t include those who commit suicide due to post-donation depression or PTSD, or who engaged in risky behavior because of psychosocial complications and end up dead.

    There’s also no information on living donors’ life expectancy. Ibrahim compared one center’s LKDs to the general population, which includes a multitude of folks who never would’ve been approved as LDs in the first place. We know that reduced kidney function increases one’s risk of hypertension, and cardiac disease and death. But we have NO data on the true rate of those health issues in living kidney donors.

    All of that put together means we really don’t know the true risks of living donation (kidney or liver), but that uncertainty isn’t being disclosed to prospective LDs either. The individual in the article didn’t get the idea living donation “wasn’t dangerous” by herself; she was given that idea from someone or some organization she deemed credible. And that’s the problem.

  8. Cara

    Although I believe it is always good to be informed of the negative as well as the positive I find a taste of bitterness in these posts. To say that someone does not save a life by donating is insulting and if you were to do a quantative survey of recipients who were luck enough to have a living donor, I doubt very seriously they would agree with you that it doesn’t save a life. There are risks with positively any type of surgery. Should someone decide that they are interested in donating I feel that it is up to them to research and make a well informed decision. As an advocate to other living donors I positively make it clear that my experience and my feelings about donating should not influence their decision to donate. I am not nor do I pretend to be a medical expert. I am here only to answer questions to others who want to know what the experience has been in my decision. You know as well as I do that paying or procuring a kidney is illegal. I don’t believe in the term that any of the people you may reference fall in that condescending arena. I believe that there are a great deal individuals male and female that have helped to change peoples lives by sharing stories and need of living donors and those who answer that need do so because it is what they choose to do. The answer is mandated and life long care of those who donate. Have you actually ever been through the donor testing process yourself? The standards are rigid and no responsible transplant center would allow the donation to take place. What you should be pushing for is for better education negative as well as positive and then respect the the decision that person makes.

  9. LDPeopleToo

    It’s not insulting, it’s factual. A transplant isn’t a cure, it’s simple a treatment. And because there are other treatments for end-stage renal disease, a transplant is not life-saving. This is not a matter of perception; this is reality.

    I think the whole ‘life-saving’ rhetoric in regards to living kidney donation is about making giving the living donor an ego boost (eg. I saved a life!). I don’t need that, and neither do myriad other folks who have stepped forward to make this sacrifice. Such a motivation should be considered “unrealistic expectations”, which will set the LKD up for some serious psychosocial consequences (See: Walter, M et al. Willingness to donate: an interview study before liver transplanation. J Med Ethics 2004 30: 544-550. And Schweitzer, J. et al. Psychological Consultation Before Living Kidney Donation: Finding Out and Handling Problem Cases. Vol. 76, 1464–1470, No. 10. 1464-1470.)

    Once again- the standards for the living donor evaluation are NOT rigid (glad to know you didn’t bother reading any of the myriad links I posted when you stated this last time). Rather than go through it again, I’ll simply link to the original in hopes that you’ll choose to educate yourself on that matter: http://livingdonorsarepeopletoo.com/born-with-one-kidney-vs-acquiring-reducing-one/#comments

    As for selling/buying a kidney (and I have no clue why you’re bringing that up), did you ever read Dr. Nancy Schepler Hughes’ story on the Rosenbaum organ trafficking ring in the U.S. that was discovered a couple of years ago? In short, she contacted every level of law enforcement, as well as OPTN and all public policy organizations, AND the transplant centers involved – WITH EVIDENCE – it was happening and no one cared. The FBI only arrested Rosenbaum A DECADE LATER while investigating money laundering, not organ trafficking. He was an incidental arrest.

    http://livingdonorsarepeopletoo.com/organ-trafficking-case-reveals-how-government-fails-living-donors/

    Dan Rather also did an investigative report on organ trafficking in the U.S. and what he was told by multiple experts is that transplant centers have a “don’t ask, don’t tell” approach to money changing hands. (http://livingdonorsarepeopletoo.com/us-transplant-dont-ask-dont-tell-policy-permits-organ-trafficking/)

    Here’s a CNN article about Mt. Sinai and organ trafficking: http://livingdonorsarepeopletoo.com/cnn-covers-organ-trafficking/

    And an Associated Press article on the whole “don’t ask, don’t tell” in regards to compensation: http://livingdonorsarepeopletoo.com/us-hospitals-dont-question-origin-of-donor-kidneys-shock/

    And PS. Refrain from personal attacks (eg. bitterness), because otherwise I’ll start deleting your comments.

  10. Jan Christensen

    Cara, if you are an advocate, by definition you are trying to influence people to donate a kidney. I donated in 1990.

    The standards were stricter then they are now. You could not have high blood pressure or be obese and donate. You can now. Sometimes they make sure the blood pressure is under control. Anyone who knows anything about blood pressure control knows that the meds often stop working and others have to be tried. Are you aware that they allow people with high blood pressure and who are obese to donate? I know this because I know of people who did so under those conditions.

    The problem is we cannot be fully informed because living donors are not followed beyond two years. When I donated, I was not followed after I was dismissed from care at six weeks. No one has been following every donor, or even most donors. We are on our own after donation. People have been denied care for complications because they don’t have insurance. They’ve lost health insurance after donation because they now have a “pre-existing” condition. Do the insurance companies know something we don’t know? Hopefully things will get better with the Affordable Healtcare law, but there’s no telling.

    My donation certainly did not cure my daughter. In two years, she was back on dialysis. You are not cured if you still have to take meds for the condition, and all recipients have to take drugs, or they will die.

    We can discuss what some people consider the low statistical risk. But it doesn’t matter if the risk is low and you are a recipient whose donor dies. I simply cannot image how distressing that would be.

    All that said, I’d do it again. It was my daughter. My son, who was only 14 when my daughter became ill and too young to donate, although he volunteered, donated a kidney to her in 2004 when the dialysis was getting to be too much for her and her health was failing even more. She wouldn’t ask him before that, and they never found a match for her. I did not influence him one way or another. It was totally his choice. He knew I had high blood pressure. No telling if that’s because of the donation or if I would have had it anyway. But the donation could not have helped matters.

    Fortunately, both are doing well right now. But I do worry about my son since he was only 27 when he donated.

    I shudder to think you might tell someone how great you’re doing after donation and after they donate they either die or have serious complications.

    Just something I think you should consider.Because it can happen.

  11. Tara

    Thank you, Cara–I completely agree with you. After reading only three articles, I too felt the “bitterness” (which is not any more of a personal attack than “transplant centers have a “don’t ask, don’t tell” approach [to organ trafficking]”). Furthermore, you not once claimed that kidney donation was a “cure,” as was subsequently hammered in to the two comments that followed.

    However, I also agree with the author in that kidney donation should not be considered “saving a life.” Liver donation can be “life-saving,” sure–kidney donation is simply “life-enhancing.” But that doesn’t make it any less important for the recipients. There are alternative treatments, of course. The recipient could continue on dialysis for the remainder of his or her life. He or she could also wait for a cadaveric kidney. And yes, living donation absolutely carries its risks, but transplant centers are required to divulge this information (as well as the much-sought-after statistics). In big bold print you’ll see that they clearly mention the illegality of compensation for organ donation. Perhaps the author should obtain one of these living donor handbooks (most transplant centers have theirs readily available online) for the readers to peruse if they are seriously considering donating.

    Lastly, recipients do not take medication post-transplant in order to “not die,” as Jan said. The medication is for anti-rejection purposes, and is to help ensure the viability of the transplanted organ.
    Transplant centers also have an array of tests and evaluations that are conducted on prospective donors to ensure that he or she is both medically and psychologically capable of donating an organ. Certain transplant centers do allow hypertensive donors. There have also been cases in which transplant centers have DENIED donors due to the very things you are listing: high BMI, uncontrolled hypertension, and one the author mentions, a higher risk of psychological implications.

    All facts need to be given to readers, both good AND bad, regarding living organ donation. And after which, as Cara concluded, the choice on whether or not to donate should ultimately be respected.

    NOTE: I am NOT a living donor advocate. I do not get paid or compensated in any way for promoting living organ donation, or for even checking the little box consenting to organ donation at the DMV. I do not fundraise, or even participate in the awareness walks. What I AM an advocate for are the facts. And if any of mine are inaccurate, I would welcome and appreciate a correction, with references (if available).

  12. LDPeopleToo

    “Bitterness” was a direct attack on the author of the posts and other folks who commented (not coincidentally, folks who disagree with Cara). “Don’t ask, don’t tell” is a QUOTE from a number of transplant industry experts on the industry’s approach to paying someone for a kidney. I’m quite confident you know the difference, but choose to ignore it for whatever reason.

    The “much sought after statistics” as you call them, don’t exist. The first living kidney donor transplant occurred in 1954, but NO identifying information was gathered on living donors until 1993. In the early 2000s, OPTN’s living donor committee (then ad-hoc) examined the demographic data gathered on living donors and found it to be inaccurate and incomplete. For example, since no quality controls had been implemented, some of the social security numbers listed for living donors belonged, in fact, to recipients.

    In 2000, the Secretary of Health mandated one year of follow-up on all living donors, expanded to two years by OPTN in 2006. Transplant centers, however, have refused to comply and neither CMS nor OPTN have enforced the policy. As recently as last year (for donors who donated between mid-2009 and mid-2010), 35.5% had no follow-up report submitted at one year. The only information required for a center to ‘get credit’ for the report was the living donor’s name and status. One year after donation, it wasn’t known if more than 1/3 of living donors were alive or dead (See: http://livingdonorsarepeopletoo.com/transplant-centers-noncompliance-with-living-donor-follow-up/).

    See the graph from the ACOT presentation on living donor follow-up here: http://livingdonorsarepeopletoo.com/the-latest-on-living-donor-follow-up-hint-its-still-really-really-bad/

    And that’s just the short, short term data. We have NOTHING that could be considered long-term. (For but one example: http://livingdonorsarepeopletoo.com/do-kidney-donors-have-kidney-disease/)

    As it happens, it’s not necessary to read every transplant center’s handbook, because some academics already did it for me. In a post I made earlier this week, regarding a published study on transplant centers’ living donor consent forms, the authors concluded that the consent forms are overwhelmingly noncompliant with CMS and OPTN requirements: policies implemented five years ago. (See here: http://livingdonorsarepeopletoo.com/u-s-transplant-centers-informed-consent-forms-are-deficient/ ). To your point, only 64% of the consent forms stated it was “illegal” to receive compensation for donation. Even if it was 100%, the “big bold print” doesn’t mean the transplant centers couldn’t/wouldn’t/haven’t/don’t look the other way if they suspect such payment is taking place. It’s impossible to think otherwise after reading the articles I’ve already linked above.

    The fact that some transplant centers use high risk LDs and others don’t is part of the problem. There should be standardized criteria for prospective living donors. It shouldn’t be a proverbial crap shoot whether or not a potential LD receives a thorough evaluation, or encounters medical professionals who prioritize their health and well-being. All prospective living donors deserve the highest standard of care. They have not, do not, and will not receive that as long as folks who profit from living donation maintain control over the process.

    And by the by, the demographics of the ‘average’ living donor has changed a lot over the course of three decades, per Poggio ED et al. Demographic & clinical characteristics associated with glomerular filtration rates in LKDs. Kidney Int. 2009 May; 75(10): 1079–1087. Specifically, they found that LKDs have gotten older, have higher BMI, and lower pre-donation GFR. They found other things too: like how the GFR cut-off for prospective LKDs isn’t based in clinical fact. I encourage a thorough read of their findings if you get the chance.

    Yes, anti-rejection medications are supposed to do just that – suppress a recipient’s immune system enough that it will not attack the transplanted organ. It’s not to ‘ensure the viability of the organ’, so to speak, because the organ was viable when it chosen for transplant. It only becomes ‘not’ viable if the recipient’s body attacks it. I suspect this is what you meant in a roundabout way, but considering you felt the need to challenge Jan’s use of “to die”, accuracy is important.

    As to that, Jan’s phrase “to die” could be interpreted in many ways. Would the recipient die without the needed organ? Possibly. Could the recipient die from the body’s rejection response? Again, possibly. If the organ is rejected, the would-be recipient will be more sensitized, and it will be more difficult to find a suitable organ for an additional transplant. Could the recipient die as a result of that wait? Once more, possibly. What if the recipient obtains an infection from the dialysis process – could they die from that? Perhaps. The point being, transplants are not cures, and a recipient will spend the rest of their life in a compromised state which requires the use of immunosuppressant medications (Also, did you know that anti-rejection meds significantly increase a recipient’s risk of cancer?)

    I hate to break it to you Tara, but if you “promote living donation”, you’re not “an advocate for the facts”. Promoting living donation pretty much requires an omission of, or cherry picking of, the so-called facts. If that wasn’t the case, I wouldn’t have such “promoters” engage in name-calling when they can’t produce source material for their assertions.

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